Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary (2016)
Chapter: Front Matter
ASSESSING THE IMPACT
OF APPLICATIONS OF
DIGITAL HEALTH RECORDS
ON ALZHEIMER’S
DISEASE RESEARCH
WORKSHOP SUMMARY
Lisa Bain and Sheena Posey Norris, Rapporteurs
Forum on Neuroscience and
Nervous System Disorders
Board on Health Sciences Policy
Institute of Medicine
THE NATIONAL ACADEMIES PRESS
Washington, DC
THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, NW • Washington, DC 20001
This activity was supported by the Alzheimer’s Association; Brain Canada Foundation; Contract No. HHSN26300026 [Under Master Base # DHHS-10001292] with the Department of Health and Human Services’ Food and Drug Administration and National Institutes of Health through the National Center for Complementary and Integrative Health, National Eye Institute, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute on Aging, National Institute on Alcohol Abuse and Alcoholism, National Institute on Drug Abuse, and NIH Blueprint for Neuroscience Research; Contract No. VA240-14-C-0057 with the Department of Veterans Affairs; Eli Lilly and Company; Foundation for the National Institutes of Health; the Gatsby Charitable Foundation; GlaxoSmithKline, Inc.; Johnson & Johnson Pharmaceutical Research and Development, LLC; Lundbeck Research USA; Merck Research Laboratories; The Michael J. Fox Foundation for Parkinson’s Research; the National Multiple Sclerosis Society; Contract No. BCS-1064270 with the National Science Foundation; One Mind for Research; Orion Bionetworks; Pfizer, Inc.; Pharmaceutical Product Development, LLC; Sanofi; the Society for Neuroscience; Takeda Pharmaceutical Company Limited; and the Wellcome Trust. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-37972-4
International Standard Book Number-10: 0-309-37972-5
DOI: 10.17226/21827
Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.
Copyright 2016 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2016. Assessing the impact of applications of digital health records on Alzheimer’s disease research: Workshop summary. Washington, DC: The National Academies Press.
The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Ralph J. Cicerone is president.
The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president.
The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.
The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.
Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org.
PLANNING COMMITTEE ON ASSESSING THE IMPACT
OF APPLICATIONS OF DIGITAL HEALTH RECORDS ON
ALZHEIMER’S DISEASE RESEARCH1
DANIEL BURCH (Chair), Pharmaceutical Product Development, LLC
TIA POWELL, Albert Einstein College of Medicine
IOM Staff
CLARE STROUD, Project Director
SHEENA M. POSEY NORRIS, Associate Program Officer
ANNALYN WELP, Senior Program Assistant
ANDREW M. POPE, Director, Board on Health Sciences Policy
______________
1Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.
FORUM ON NEUROSCIENCE AND NERVOUS
SYSTEM DISORDERS1
STEVEN HYMAN (Chair), The Broad Institute of Massachusetts Institute of Technology and Harvard University
STORY LANDIS (Vice Chair), Former Director, National Institute of Neurological Disorders and Stroke
SALVATORE ALESCI, Takeda Pharmaceuticals International, Inc. (until November 2015)
SUSAN AMARA, Society for Neuroscience
RITA BALICE-GORDON, Pfizer Global Research and Development (since September 2015)
KATJA BROSE, Cell Press
DANIEL BURCH, Pharmaceutical Product Development, LLC
SARAH CADDICK, Gatsby Charitable Foundation
ROSA CANET-AVILES, Foundation for the National Institutes of Health
MARIA CARRILLO, Alzheimer’s Association
C. THOMAS CASKEY, Baylor College of Medicine
KAREN CHANDROSS, Sanofi US
TIMOTHY COETZEE, National Multiple Sclerosis Society
FAY LOMAX COOK, National Science Foundation
BRUCE CUTHBERT, National Institute of Mental Health (since November 2015)
WILLIAM DUNN, Food and Drug Administration
EMMELINE EDWARDS, National Center for Complementary and Integrative Health
MARTHA FARAH, University of Pennsylvania
DANIEL GESCHWIND, University of California, Los Angeles
HANK GREELY, Stanford University
MAGALI HAAS, Cohen Veterans Bioscience
RAMONA HICKS, One Mind for Research
RICHARD HODES, National Institute on Aging
STUART HOFFMAN, U.S. Department of Veterans Affairs
THOMAS INSEL, National Institute of Mental Health (until October 2015)
______________
1Institute of Medicine forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.
PHILIP IREDALE, Pfizer Inc. (until August 2015)
MICHAEL IRIZARRY, Eli Lilly and Company
JOHN ISAAC, Wellcome Trust
INEZ JABALPURWALA, Brain Canada Foundation
FRANCES JENSEN, University of Pennsylvania School of Medicine
GEORGE KOOB, National Institute on Alcohol Abuse and Alcoholism
WALTER KOROSHETZ, National Institute of Neurological Disorders and Stroke
ALAN LESHNER, American Association for the Advancement of Science (Emeritus)
HUSSEINI MANJI, Johnson & Johnson Pharmaceutical Research and Development, LLC
DAVID MICHELSON, Merck Research Laboratories
JAMES OLDS, National Science Foundation
ATUL PANDE, Tal Medical
STEVEN PAUL, Voyager Therapeutics
EMILIANGELO RATTI, Takeda Pharmaceuticals International, Inc. (since December 2015)
TODD SHERER, The Michael J. Fox Foundation for Parkinson’s Research
DAVID SHURTLEFF, National Center for Complementary and Integrative Health
PAUL SIEVING, National Eye Institute
NORA VOLKOW, National Institute on Drug Abuse
STEVIN ZORN, Lundbeck Research USA
IOM Staff
CLARE STROUD, Forum Director
SHEENA M. POSEY NORRIS, Associate Program Officer
ANNALYN M. WELP, Senior Program Assistant
ANDREW M. POPE, Director, Board on Health Sciences Policy
Reviewers
This workshop summary has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published workshop summary as sound as possible and to ensure that the workshop summary meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We wish to thank the following individuals for their review of this workshop summary:
IYA KHALIL, GNS Healthcare
SIMON LOVESTONE, University of Oxford
MATS SUNDGREN, AstraZeneca R&D
GEORGE VRADENBURG, USAgainstAlzheimer’s
Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by ERIC B. LARSON, Group Health Research Institute. He was responsible for making certain that an independent examination of this workshop summary was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this workshop summary rests entirely with the rapporteurs and the institution.
Contents
Potential Impact of DHRs on AD Research
Topics Highlighted by Individual Session Participants
2 Building Infrastructure to Enable Data Sharing and Management
Rochester Epidemiology Project
European Prevention of Alzheimer’s Disease
3 Ethical, Legal, and Societal Considerations
